sproggle
Jan
- Messages
- 235
- Location
- Teesside, England UK
Update:
Our petition is now hosted on iPetitions... please sign!
Please follow the link below and sign our petition to help us highlight the plight of ME sufferers by getting the BBC Programme Panorama to investigate and highlight the ways in which sufferers have been marginalised and neglected by UK government bodies.
http://www.ipetitions.com/petition/meinvestigation/
Thank you x
(I apologise if you have already signed through the email address I provided, please sign again this way.)
*It has been updated and hopefully improved upon since the draft was posted below please view the finalized petition &sign at iPetitions*
Hi all,
Our Facebook Group Page is called Panorama ME Investigation Campaign (by Getting ME on TV!)
http://www.facebook.com/home.php#!/group.php?gid=397706469637&ref=ts
Our petition is now hosted on iPetitions... please sign!
Please follow the link below and sign our petition to help us highlight the plight of ME sufferers by getting the BBC Programme Panorama to investigate and highlight the ways in which sufferers have been marginalised and neglected by UK government bodies.
http://www.ipetitions.com/petition/meinvestigation/
Thank you x
(I apologise if you have already signed through the email address I provided, please sign again this way.)
*It has been updated and hopefully improved upon since the draft was posted below please view the finalized petition &sign at iPetitions*
Hi all,
* Note this is the first draft I will soon be adding a paragraph concerning the safety of the blood supply &may also add to the arguements as the XMRV situation develops...In the interest of the general public we petition the Panorama Team to conduct a special investigation into the human rights travesty that is the long held government approach to Myalgic Encephalomyelitis, ME.
ME means:
My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.
Things that need investigation:
The UK is a member of The World Health Organisation, and WHO has defined ME as a neurological disease since 1969. Why have Psychologists been allowed, even encouraged, to monopolise a psychosomatic approach to this very real physical disease at the complete neglect of biomedical research?
Why has a seriously debilitating neurological disease, which can be fatal, been allowed to be dismissed as Chronic Fatigue Syndrome, CFS?
There are many misconceptions about the very nature of ME, the most prevalent being the notion that, in the majority of cases, the overwhelming symptom is one of fatigue. This has permeated the thinking about this disease so profusely that it has long been dubbed “Chronic Fatigue Syndrome” a situation that has been catastrophically damaging to sufferers and their carers/parents. The Oxford definition of CFS as used by the psychiatric lobby, is deliberately broad and vague, it does not require myalgias or encephalomyelitis, they are only listed as optional. Of the 21 clinical and scientific researchers who wrote the Oxford Guidelines, eight were in psychiatry or psychology, another six were research scientists, non-psychiatric clinicians were few.
CFS is a waste basket diagnosis, it allows patients to be neglected, ignored, even ridiculed if they continue to search for the biological cause of their very real disease. Doctors are trained how to 'deal' with such patients. They are told not to get into conversation about physical symptoms or to let on that they think they're delusional. To send them off with painkillers and anti depressants, a course of CBT to correct their abnormal illness beliefs and GET to drag them off the sofa and back to work. When this frankly ridiculous approach to treating a neurological disease fails to work, or results in further disability, who's to blame? The patient.
It has been convenient for both Psychologists and the medical establishment at large to continuously reiterate the same propaganda. Maybe they actually believe the misinformation themselves, maybe they realise they're in the wrong, who knows?
Unfortunately the harsh truth has been known by those unfortunate enough to have had their lives blighted by this disease for decades. Patient advocates have repeatedly put foreword articulate arguments quoting scientific studies that show significant and varied physical abnormalities in ME patients. The abnormalities found in ME patients (when the correct tests are done) include: brain lesions, abnormal fluid in their spinal cords and immune system dysfunction, why have these findings repeatedly been ignored?
Sufferers of the extremely debilitating neuro-immune disease ME have been lumped into the broad waste basket diagnosis of CFS and quickly dismissed by the medical profession at large. The Oxford Criteria is too inclusive. A number of different types of illness including ME are being lumped together under the single banner 'CFS'. The Royal Colleges Report on CFS 1996 used the Oxford Criteria and claimed up to 1.4 million people in the UK had CFS. Estimates of ME incidence are much lower. Supporters of the psychosocial model and the term CFS are studying idiopathic chronic fatigue and claiming otherwise.
The soon to be published Medical Research Council CFS PACE* trial is one example of many government funded studies which researched solely psychologically based approaches to ME/CFS. This study of CBT and GET on ME, costing millions of pounds of tax payers money, uses the vague Oxford Criteria psychologists love so much. The government bias towards a psychosomatic approach is bewildering. Who ultimately can be held responsible for allowing this to happen? What are the motives behind it?
Why when Professor Malcolm Hooper wrote to Sir Michael Rawlins, chairman of NICE, supplying a 442 page report of evidence supporting his complaint against the MRC PACE trial did Sir Michael Rawlins feel it necessary to refuse to even look at the evidence provided and immediately return the entire report, stating he was “not prepared to enter into any correspondence on the matter”?
Why, when a group of sufferers brought a judicial review about the inappropriate nature of the NICE Clinical Guidelines(CG53) on ME/CFS, did the judge refuse to admit a large proportion of their evidence, then throw out their case "for lack of evidence"?
Why is the MRC so intent on withholding files on ME, held in the UK Government National Archives, that date back to 1988 from the general public? The files in question, originally due for release in 2023, are now to remain secret until at least 2071. Why does the government deem it necessary to enforce such an extraordinarily long time of closure on these files which are of great significance to public health?
Why aren't ME patients routinely referred to Neurologists and why are Neurologists still not widely knowledgeable about ME? Few sufferers get to see a Neurologist on diagnosis, many ME sufferers will never see one. Why is there no empirical diagnosis available under the NHS for ME/CFS? Why will the NHS not fund the tests that diagnose the disease, yet they will fund the many tests that don't show the physical damage caused by ME?
Why was Sophia Mirza, a gravely sick ME sufferer, forcibly removed from her home in 2003 and sectioned in a mental institution? An action which ultimately hastened her death. In Sophia's case it her autopsy that finally provided the physical evidence of disease, in life she was utterly neglected by the medical profession who refused her treatment and instead inappropriately incarcerated her in a mental ward. This criminal neglect of vulnerable ME sufferers has been the status quo for decades, why has this been allowed to happen and for so long?
Why when there are many opportunities to research the physical disease process in ME patients, is this not being done and instead the psychosomatic approach to management repeatedly studied instead? Why is it continuously left to patient funded charities to conduct biomedical research when the government is willing to spend millions on trials for CBT and GET?
Thanks to a number of committed researchers in Nevada, a recent study was published in Science that strongly links the retrovirus XMRV* to a well defined cohort of ME/CFS patients. This was the most exciting and encouraging step forward in research into the disease in many years. Why was a UK XMRV study* (led by psychiatrists) then immediately rushed through without consultation with the WPI, who's study they were supposed to be replicating, and given only four days for peer review? The resulting rushed study was unable to find XMRV, which is known to be difficult to detect, in any of the 186 samples. The rigorous WPI study detected XMRV in 3.7% of the healthy population studied, by that ratio even if every single one of the Imperial College study patient group had been wrongly diagnosed with ME/CFS and simply had idiopathic chronic fatigue, they still should have found evidence of XMRV in 6 of the samples. This was yet another cynical attempt by vested interests to discredit any scientific study that dares show proof of physical disease.
It has taken a privately funded institute in America to bring this evidence to light more than 26 years after it was widely known to be a serious neuro-immune disease. The 1984 outbreak in Nevada provided substantial evidence of physical disease. Patients scans showed brain legions and other tests showed distinct immune dysfunction. However, the American authorities already dealing with the AIDS epidemic decided to ignore this serious transmittable disease at great cost to all involved. The way the CDC ignored the outbreak was shameful and once the patients had conveniently been marginalised, the government stance was set in stone. The situation in America is scarily similar to the one in the UK except for one saving grace, a few wealthy, caring, truth seeking people fighting against the system to help patients and get justice. This whole fiasco is carefully reported in full by Hillary Johnson, an investigative journalist, in her book Osler's Web* (originally published in 1996).
There is an unfortunate history of ignorance towards previously unknown diseases. MS was once dubbed the malingerers charter, AIDS was once dismissed as a disease that only affected gay men. When will the wide spread discrimination towards ME sufferers end? When will patients finally be free from being coerced and bullied into dangerous GET programs? When will the severely affected finally be free from the threat of being sectioned, simply for failing to recover? The 1999 Panorama Programme “Sick and Tired” highlighted the mistreatment of children with ME by the medical profession, it is regretful nothing has changed.
We need to once and for all dismiss the ridiculous opinion that ME is in anyway related to mental health problems or abnormal illness beliefs. People become anxious and or depressed due to this chronic illness, as with any serious illness. Helping people overcome these difficulties is important and can no doubt improve quality of life. However, it is a completely separate issue to the illness itself and should be treated as such.
Although this petition has mainly referred to ME/CFS. ME/CFS has many similarities with the related neuro-immune diseases Fibromyalgia, Atypical MS, Multiple Chemical Sensitivity and Gulf War Syndrome. The need for the right medical tests to be done in order to properly diagnose these patients and biomedical research to be done to further treatment applies equally to these conditions which are likely all variants of the same disease simply going under different names.
Yours Sincerely,
References
The CFS Oxford Criteria
The CFS Oxford Criteria was set out in the Oxford Guidelines - MC Sharpe et al. A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM Vol.84, Feb. 1991, pp 118-21.
OXFORD CRITERIA (1991)
Chronic Fatigue Syndrome (CFS)
a:- A syndrome characterised by fatigue as the principal symptom
b:- A syndrome of definite onset that is not life long
c:- The fatigue is severe, disabling, and affects physical and mental functioning
d:- The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time
e:- Other symptoms may be present, particularly myalgia, mood and sleep disturbance
f:- Certain patients should be excluded from the definition.
They include:
i:- Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently. All patients should have a history and physical examination performed by a competent physician
ii:- Patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease. Other psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion.
Ramsay definition:
Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.
[Muscle phenomena]: Muscle fatiguability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.
[Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.
[Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoeuvres such as turning a key in a lock or taking the cork of a bottle.
Circulatory impairment. Most cases of ME complain of
Cold extremities and
Hypersensitivity to climactic change . . .
Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill
Cerebral dysfunction
The cardinal features:
Impairment of memory
Impairment of powers of concentration and
Emotional liability
[Other] common deviations from normal cerebral function:
Failure to recall recent or past events,
Difficulty in completing a line of thought
Becoming tongue-tied in the middle of a sentence, and a
Strong inclination to use wrong words, saying “door” when they mean “table” or “hot” when they mean “cold”
Complete inability to comprehend a paragraph even after re-reading it
Bouts of uncontrollable weeping
Alterations of sleep rhythm or vivid dreams, or both
[Accompanying] features [that] can only be attributed to involvement of the
Autonomic nervous system:
Frequency of micturition (urination)
Hyperacusis (hypersensitivity to noise)
Episodic sweating
Orthostatic tachycardia . . .
Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.
An alarming tendency to become chronic. [Added in the 2nd edition, 1988]
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The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.
Instead of an uneventful recovery the patient is dogged by:
Persistent and profound fatigue accompanied by a medley of symptoms such as
Headache
Giddiness
Muscle pain, cramps, or twitchings
Muscle tenderness and weakness
Paraesthesiae [numbness or tingling in the extremities]
Frequency of micturition [urination]
Blurred vision and/or diplopia [double vision]
Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
Tinnitus [constant sound in the ears], and a
General sense of “feeling awful.”
Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia …
All cases run a low-grade pyrexia (fever), seldom exceeding 100F (c. 38C) and usually subsiding within a week.
A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.
PACE
Pacing, graded Activity and Cognitive behaviour Therapy: a randomised Evaluation
The full NICE Guidelines CG53 Issued in 2007 entitled “Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management”
http://www.nice.org.uk/nicemedia/pdf/CG53FullGuidance.pdf
Imperial College London XMRV Study.
Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome authored by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely, Anthony Cleare.
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519
The Whittemore Peterson Institute for Neuro Immune Disease Research Centre is located at The University of Nevada, Reno. http://www.wpinstitute.org/
The paper entitled Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients was published in Science on 8th October 2009. http://www.sciencemag.org/cgi/content/abstract/1179052
After further refinement of testing XMRV was detected in an astonishing 95% of the patient group. Quote from WPI website Overview of XMRV section.
“ We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections..
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others. ”
Osler's Web, originally published in 1996 by Hillary Johnson. Is an investigative journalists detailed account showing lack of appropriate on behalf of the CDC and NIH to ME. The story starts back in the early eighties and is a thorough first hand account in which all sources are named and all information rigorously authenticated. A must read for any ME campaigner able to do so.
Quote about the book from http://www.oslersweb.com/
“ Osler's Web will introduce you to the men and women who first recognized this disease in their medical clinics and, eventually, described the disease in medical journal articles in the middle and late 1980s. You will meet, as well, the scientists and bureaucrats inside the Centers for Disease Control and the National Institutes of Health who attempted to squelch research throughout the 1980s and 1990s, and scientists in elite private institutions who made important discoveries that were buried under a blizzard of propaganda. You will hear the voices of people who fell ill--children and adults--and the voices of their doctors, who struggled to help them.”
Our Facebook Group Page is called Panorama ME Investigation Campaign (by Getting ME on TV!)
http://www.facebook.com/home.php#!/group.php?gid=397706469637&ref=ts
